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Discussion:
About to start Lupron-scary! Advice or anecdotes?
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I just had my second endo related surgery and at my post op I get my first Lupron shot. I've heard horror stories. Has anyone experienced loss of fertility after Lupron? How bad is it really?
Posted on 01/31/13, 06:01 pm
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Reply #11 - 02/04/13  10:02pm
" Obviously you have to make the choice that you feel is best for you. I finally decided on the Lupron shot and take the 1 month shot. Can't beleive the difference so far, no ovulation pain which was a killer. Couldn't be happier so far with my decision to take the shot.

Are you on a monthly or 3 month shot? And I do take 5mg of Norethindrone daily (Add Back), and I have had no issues so far, only good to report, so happy.

The key is to flush built up estrogen out of your system, this is done through the liver. I drink tons of water and take B6 daily, I also take a calcuim supplement as the Lupron can cause some bone density loss. I smoke occasionally, so my doctor thinks no harm with the extra calcium.

Look up Castor Oil Pack, this helps flush out the liver and you would be amazed at how great you feel with this!

Buy hormone free grocery basics, milk, eggs, cheese and meat, and will never know the difference except how good you feel and weight comes off!

If you are really sick of your pain, step up and do something about it, and I'm not talking Lupron, but diet change. It's amazing when you commit the difference it makes!

As for fertility, Lupron is given to many women who want to get pregnant. Research girl!

Good luck and keep us posted! "
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Reply #12 - 02/04/13  10:24pm
" Appologize as I got a little caught up with my stuff. Lupron has alot of good benefits, taking the estrogen out of your body stops the further progression of endometriosis, and can actually put it into atrophy. If you have issues with uterine fibroids or cysts, if there is no estrogen to feed on, these can also stop growing and can possibly shrink, and go into atrophy.

If you can get it under control and keep the excess estrogen from building up in your body, you are probably going to be in pretty good shape.

I've done research on this and I think some women produce more estrogen, and we are the ones that have these issues, like endometriosis and uterine fibroids...almost like diabetes in a way, keeping your estrogen under control is key.

I'm taking monthly Lupron shots instead of the 3 month shots, so I have more control over it.

Will take advantage of how good I've been feeling since my first shot, and keep my diet in check as you can't be on Lupron forever. "
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Reply #13 - 02/05/13  3:40am
" I took five months of Lupron 2011-Jan 2012 and it was really rough. I admit in the the middle of the course was the best pain relief I found, but the side effects were so bad I wasn't sure what was worse.

The side effects were so bad by the 4th month my OB gave me add back therapy w/ an estrogen patch and progesterone birth control.
Helped side effects, but I pretty much immediately started bleeding again and the pain came back. So it seemed pretty ridiculous to be taking all these hormones to feel the same way again.
I was grouchy, couldn't sleep, insanely irritable. I seemed to only have two body temperatures, hot and sweaty or chills. I had to wear a short sleeved shirt to work everyday and keep a light jacket on my chair that I would take on and off several times a day. I was nauseous a lot and could not seem to sleep more than five hours a night no matter what I did. So I was the closest I've been to pain free, but I was miserable.

This is also when you really find out who your real friends are, I think a lot of my personal relationships suffered during this time.
About four months in I also stumbled across some research that lupron could have longterm effects on your brain and memory. I've read about other women who experienced this too. I've always been pretty forgetful, but it's gotten much worse and never really improved. I mean one time I put an open jar of spaghetti in the cupboard and put uncooked pasta in the fridge. Sometimes I feel like I'm losing my mind at 27.

To put it simply estrogen helps feed your neurons and shutting off your body's estrogen production for six mths will have an effect.

So really you have to decide if it's worth it to you to be on a drug that may or may not help you. On the other hand I really think it may have kept my endo at bay and that may have been worth it. It's a hard call for me to make too, going back I'm not sure what I'd do. I just wanted to give you my full story so you'd at least no what you may possibly be going into instead of figuring it all out a few months in.

If you have any qts feel free ask. "
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Reply #14 - 02/25/13  3:01pm
" Hi, ahallock, and welcome!
Sorry you're having to resort to such drastic measures, but for me, Lupron has been absolutely worth the side-effects. It has taken away about 90% of my pain. The graphic on the side of this page shows that 64% of patients on DS report that Lupron works. This statistic holds up to real-world figures as well. About two thirds of patients are happy with the results. That leaves a lot of room for optimism that you could be in that category, too.

I will also be ttc after coming off Lupron. Don't worry about loss of fertility, it is routinely used in IVF cycles. I don't think it would be a given as a standard protocol to women ttc if it could harm fertility.

I didn't really notice any symptoms the first month. For about 2-3 weeks in the second month, I didn't sleep very much and the hot flashes were pretty intense, but thankfully it was short-lived. I found this spray for hot-flashes that I put on the back of my neck, behind my knees and inside my wrists to get through the worst of it. It did save me some embarrassment and kept me more comfortable. Sorry if this is TMI, but you're probably going to need to find a good lube that works well for you, and get lots of it.

I can't take add-back, so that wasn't an option for me, but I've heard it can make the menopause symptoms less drastic and may prevent bone loss. My doc doesn't recommend it to start with because it can be tough to tell what symptoms are being caused by what. He also tries to avoid giving hormones whenever possible because the hormones feed endo. So, maybe this is your doctor's thinking, too? You might ask what her thoughts are on add-back therapy.

Anyway, I apologize for not responding sooner and hope your recovery is still going well. Good luck! "
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Reply #15 - 02/25/13  11:47pm
" Hello,
I'm new to this support group but wanted to let you know what my experience with Lupron was like. I was on the one month shot with Northindrone as the addback medication daily. It was a godsend! I was in unbearable pain before the Lupron, while on it I was almost pain free. And when I say unbearable pain I mean taking oxycodone, fentanyl, and celebrex daily with no relief.
As far as side effects go be prepared for the first month to actually worsen your pain because of the hormone changes. I was very nauseated from it and lost a total of 25 pounds (not good as I am small already). The biggest thing for me is I had a severe and rare reaction to it where it worsened my asthma to the point where I was almost hospitalized, so that's when I was taken off the medication.
Sadly the pain relief didn't last long for me, after a few months I was right back pain wise where I was before the Lupron, but my dr assures me my fertility remains the same. Neither better nor worse, Looking back on the experience I felt so wonderful I would do it again in a heartbeat.
I hope this helps! "
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Reply #16 - 02/26/13  3:08pm
" I have been on the Lupron shot and even tho it did not help me a lot of other wemon have said it helps so much. Lupron does put you through a menopause state and you have all the hot flashes, night sweats, and etc. I couldnt last 6 months because the effects of being on anti-depression meds and being depressed made it worse. so doc took me off! I think maybe if i would have stuck it out it prob would have worked. Everyone is diffrent and It might help you. I know a lot of women that has tried it even on here says that it worked for them!!!! "

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